Incorporating - Polio Oz News
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formerly Post-Polio Network (NSW)
Incorporating – Polio Oz News
Editors: Nola Buck and Susan Ellis PO Box 2799, North Parramatta
Email: editor@polionsw.org.au NSW AUSTRALIA 1750
Website: www.polionsw.org.au Phone No: 02 9890 0946
Patrons: Michael Lynch AO CBE Professor Emeritus Sir Gustav Nossal AC CBE FAA FRS
Editor’s Report:
The Polio NSW Board held a planning meeting by ZOOM recently to discuss what is ahead
for us in 2021. We have a number of new ideas on how to support our members in a more
conducive way, taking into account our increasing fatigue and mobility issues.
COVID has opened up many options for staying connected to our family and friends e.g.
video calls or ZOOM meetings. Perhaps we could still hold seminars, an AGM or support
group meetings using different technology. Taking advantage of new technology will be
more cost effective and fatigue effective. For our Board members not having to travel great
distances to attend meetings is a perfect example of the benefits of using these new means
of communication.
These changes will require some organising of course for both the Board and for members.
Some members may not have access to a computer or the knowhow BUT using a family
member or friend‘s PC or laptop could work. Once dates for ‗events‘ are known members
could arrange for their ‗tech‘ person to be available to allow this to happen in the
convenience of your home or theirs. This is how two of our Board members make it work
for them – and it includes a lunch outing afterwards!
Communicating more regularly by email would be of great benefit as well, when the Board
has items of interest to share with members, such as notifications from Polio Australia,
Consumer Health Forum or of an interesting event. Similarly, for those who don‘t have
email access perhaps they could supply a contact email address, i.e. a family member‘s
email address. Provide your email contact details to the office by email address
office@polionsw.org.au or phone 9890 0946. A group email list will be setup to make this
process as simple as possible for our Board to achieve.
Our newsletter, Network News, will continue to be mailed out as usual or emailed to those
members who have selected this option.
This issue of Network News covers many topics that I hope will be of interest - from
breathing issues, bracing (Callipers - AFOs, KAFOs), nerve pain and back issues and some
advice from Dr DeMayo via Dubai. On page 5, Polio Australia‘s Community Program
Manager, Stephanie Cantrill, announces ZOOM chat meetings for 2021 – they are
conducted well and I encourage you to give it a go as a test run for when Polio NSW gets
up and running with ZOOM!
Unless otherwise stated, the articles in Network News may be reprinted provided that they are reproduced in full (including any
references) and the author, the source and Polio NSW are acknowledged in full. Articles may not be edited or summarised without the
prior written approval of Polio NSW. The views expressed in this publication are not necessarily those of Polio NSW, and any products,
services or treatments described are not necessarily endorsed or recommended by Polio NSW.
Polio NSW Network News – Issue 110 – February 2021 Page 1
Reprinted from PA Polio Survivors Network, January 2021 www.papolionetwork.org
A psychologist walked around a room while teaching stress
management to an audience. As she raised a glass of water,
everyone expected they'd be asked the "half empty or half full"
question. Instead, with a smile on her face, she inquired: "How
heavy is this glass of water?"
Answers that were called out ranged from 8 oz. to 20 oz. She
replied, "The absolute weight doesn't matter. It depends on how
long I hold it. If I hold it for a minute, it's not a problem. If I hold it
for an hour, I'll have an ache in my arm. If I hold it for a day, my
arm will feel numb and paralyzed. In each case, the weight of
the glass doesn't change, but the longer I hold it, the heavier it becomes."
She continued, "The stresses and worries in life are like that glass of water. Think about them
for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if
you think about them all day long, you will feel paralyzed –incapable of doing anything."
Remember to put the glass down.
―This applies to PPS - Consider using power mobility outside and inside the house. One step at
a time. But, don't wait until your legs and/or arms are not stable anymore.‖
A post from survivor Jann Hartmann From the 2018, PNNJ Conference.
The regional seniors travel card provides eligible seniors in regional, rural and remote areas
with a $250 prepaid card to help ease the cost of travel. You can use the travel card at certain
retailers across Australia to pay for fuel, taxis and pre-booked NSW Trainlink Regional trains
and coaches.
The regional seniors travel card program is available for a 2-year trial period (2020-2021).
Application for eligible seniors for the 2021 card will open on 18 January 2021 and will close on
30 November 2021.
Services Australia
You must be:
receiving the Age Pension; or
a Commonwealth Seniors Health Card holder
Department of Veterans’ Affairs
You must be receiving one of the following:
Age Pension
Service Pension
Disability Pension under the Veterans’ Entitlements Act 1986
War Widow(er) Pension
Or hold a Commonwealth Seniors Health Card.
You must also have received your pension or have held your card for at least one
month.
Note: Services Australia was formerly the Department of Human Services.
How to apply: Due to COVID restrictions we strongly advised you apply online at
service.nsw.gov.au or by phone 13 77 88, rather than visiting a service centre.
Page 2 Network News – Issue 110 – February 2021 Polio NSW
Information provided by the Physical Disability Council of NSW The Taxi Transport Subsidy Scheme is transitioning away from manual paper travel dockets to a digital Smartcard. This will happen over several months starting in NSW regional areas and concluding in Sydney Metro. If you‘re a current participant there‘s no need to apply for the Smartcard, you‘ll be contacted directly by Transport for NSW when it‘s being introduced in your area. Transport for NSW will issue you a Smartcard and instructions on how to use it. This will happen before your area transitions away from paper travel dockets. Find out more on the Transport for NSW website. Have station upgrades changed your life? As part of our involvement in Transport for NSW‘s Accessible Transport Advisory Committee, we have been approached by the Transport Access Program who want to hear from people with disability who have benefited from transport upgrades. If you have a story you are happy to share with Transport for NSW, register your interest via email to admin@pdcnsw.org.au and someone from the PDCN team will contact you in the new year. The following two articles are reprinted from IDEAS, Newletter Jan/Feb 2021. IDEAS - Disability Information Free, Accurate & Independent www.ideas.org.au The NSW Government launched the Dine & Discover NSW voucher scheme to encourage the community to get out and about and support dining, arts and tourism businesses and to stimulate spending in the economy. In early December, the scheme invited customers to use their vouchers with participating COVID Safe businesses as part of a trial in The Rocks. This program will then be rolled out across NSW from March 2021. How does Dine & Discover NSW work? Every NSW resident aged 18 and over will be eligible for four $25 vouchers worth $100 in total. The vouchers can be used at participating NSW businesses that are registered as COVID safe. The Dine & Discover NSW vouchers will be divided into two categories: • Two $25 vouchers to be used for eating in at restaurants, cafes, bars, pubs and clubs from Monday to Thursday • Two $25 vouchers to be used for entertainment and recreation, including cultural institutions, live music and arts venues, available 7 days a week How do I apply for the vouchers? To participate in Dine & Discover NSW, you must have a MyServiceNSW account. You can download the Service NSW app now and register for a MyServiceNSW account ahead of the vouchers becoming available from March 2021. SERVICE NSW Contact Details: www.service.nsw.gov.au Phone: 13 77 88 Polio NSW Network News – Issue 110 – February 2021 Page 3
Buy or Sell:
Cars Beds and
Equipment
Wheelchairs Accessible
Scooters Properties
Website: www.ebility.com.au Phone: 1800 029 904 Email: sales@e-bility.com
ORTHOMOTION is opening a new orthotics clinic in Sydney‘s south:-
Suite 113, 59-63 Captain Cook Drive, Caringbah
Orthomotion offer a comprehensive orthotic clinical service across two Sydney locations;
their new clinic at Caringbah and at Advance Rehab Centre, 5 George Place, Artarmon.
They offer clients access to technically advanced and innovative assistive devices to help
achieve mobility goals.
Bernard Badorrek, MAOPA CPO, is a neuromuscular orthotist who specialises in the
orthotic management of neuromuscular disorders such as poliomyelitis, cerebral palsy,
stroke, brain and spinal injury, MS, neuropathy and MND. Bernard has presented at Polio
Australia‘s International Conference and is orthotist to a number of our members. For
reviews of their experiences visit ORTHOMOTION‘s website www.orthomotion.com.au.
Bernard established ORTHOMOTION in 2012 as a clinical practice specialising in the
treatment of people with mobility impairments. He has 20 years experience in the orthotics
profession and has practised in Melbourne and Sydney in both private and public facilities,
including Advance Rehab Centre, Prince of Wales Hospital, Royal North Shore Hospital
and Orthotic Consultants.
To book an appointment for an assessment call: (02) 9055 5300
Page 4 Network News – Issue 110 – February 2021 Polio NSW
Stephanie Cantrill, Polio Australia‘s Community Programs Manager, sends this announcement. If you are
interested in participating in one of these chat sessions contact Stephanie via Polio Australia‘s website.
www.polioaustralia.org.au/community-information-sessions
Monthly Zoom Chats
Many of you were able to join some of our Zoom chats with the polio community last year.
It was great to connect with you, and great to provide an opportunity for you to connect
with each other!
As requested, we‘ve decided to continue these chats into 2021. We‘re starting with a
monthly informal chat for anyone who would like to join us from across Australia.
The sessions will be held on the first Monday of each month* at 11.00am
NSW/ACT/Vic/Tas time (make sure you know the right time in your state!).
Over the course of the year, we‘ll be adding more sessions – webinars, focused sessions
around specific topics, etc. As well as that, we want to keep these monthly chats open to
anyone looking for connection, sharing and learning with the polio community in Australia.
We‘ll try to send out a question or two in advance of each meeting, to get you thinking and
sharing!
*The April meeting will be on the second Monday due to the Easter public holiday.
Editor: I have participated in three of these meetings and found them to be informative
and fun! A lot like an informal support group meeting really. To book in for a chat go to:
www.bit.ly/monthly-polio-chats If you do not have access to a computer perhaps a family
member or friend could set this up for you on their PC or laptop so you can participate.
Reprinted from PA Polio Survivors Network www.papolionetwork.org 2020
A Bruno Byte
From Dr. Richard L. Bruno, HD, PhD
Director, International Centre for Polio Education
The Encyclopedia of Polio and Post-Polio Sequelae
contains all of Dr. Bruno‘s articles, monographs, commentaries
and―Bruno Bytes‖ www.papolionetwork.org/encyclopedia
Bracing for Polio Survivors:
Question: The knee on my polio leg kept bending further backward over the years. I was
told to get a brace but didn't want one until I absolutely had to have it. After a while my
knee hurt so much I‘ve finally gotten a brace. My knee bends so far back now that the
brace bites into my skin and is so painful I can't wear it. Even if I could wear the brace, it is
so heavy I can't lift my leg. What can I do?
Polio NSW Network News – Issue 110 – February 2021 Page 5
Dr. Bruno’s Response: Unfortunately, it's too late for a brace to help. Braces are designed
to support a weak leg, not to fix mechanical problems like recurvatum ("back knee"). We
have seen many braces that hurt too much to wear because they were intended to "fix"
recurvatum or to straighten a foot that has turned outward for 40 years. All braces should
be designed to fit your leg just as it is, not to make it look the way other peoples' legs do,
which leads to a Post-Polio Precept: never brace to fix a deformity!
Many polio survivors came to The Post-Polio Institute with braces that were unusable
because they are too heavy, made with the 1940's vintage steel, aluminum metal uprights,
contain way too much plastic or have ankle joints. The Post-Polio Institute patients do very
well with the new lightweight braces that use plastic molded to the shape of your foot and
leg to replace the metal uprights. The most common brace worn by polio survivors is the
short leg brace, the molded ankle-foot orthosis (MAFO). It is made of a relatively thin plastic
that slips into your shoe and goes up the back or front of your lower leg to stop foot drop,
give a spring to your step if you have weak calf muscles, and even support a weakened
thigh muscle to help prevent the knee from buckling.
The brace that you were prescribed: the long leg brace or knee-ankle-foot orthosis (KAFO),
usually replaces the metal uprights with molded plastic that slips into your shoe, goes up
the back of your lower leg and is attached to a plastic cuff behind your thigh with a metal
hinge and lock at the knee. Uprights can be used in place of plastic but are now made of
graphite -- a super-strong, ultra-lightweight but very expensive composite material used in
airplanes -- if you need extra support or if your leg twists too much to be comfortable in a
molded brace.
There are now two types of KAFO knee joints: the old, familiar joint with drop-locks (―Bale‖
locks) or a spring-loaded latch that prevents the knee from bending when you stand and
walk. A newer development, the offset joint, can be used by those who have some strength
in their quadriceps and whose knees bend backward at least a little. The offset joint doesn't
lock, but it still prevents the knee from bending when your leg is straight. With the offset
joint you can swing your leg normally when you walk but be secure when you're standing.
However, polio survivors should avoid ankle joints, be they plastic or metal, which prevent
your foot from dropping but allow your ankle to bend upward. Hinged ankles add weight to
the brace, take away support for weakened thigh muscles and prevent the brace from
helping your leg to spring forward.
I'm sorry a brace can't help you. We have unsuccessfully tried to brace other polio survivors
with severe recurvatum. They, too, couldn't wear a KAFO because it hurt too much.
Instead, they needed to use crutches or a wheelchair, which raises two important points:
waiting until you‘re ready" or until you "have to" before using an assistive device is waiting
too long; and, even if you are willing and able to use a brace, you will also need to use a
cane or crutches. How do you know which to use?
The rule of thumb is: if you use a MAFO, you also need a cane; if you use a KAFO, you
need two forearm crutches.
If you have a brace on one leg, a cane in the hand on the opposite side shifts your weight
away from the weaker, braced leg. Using two forearm crutches with a KAFO takes the load
off your stronger leg as well as overused hip and lower back muscles on both sides. But
there's a problem. Canes and crutches put a strain on your hands, arms and shoulders and
can cause carpal tunnel syndrome and upper body pain and muscle weakness.
This is why we always recommend Polio survivors see a qualified Physiatrist. They are
specially trained to manage these issues.
Page 6 Network News – Issue 110 – February 2021 Polio NSW
How do you save your arms? By using a wheelchair, especially outside the house.
To walk is painful, to roll divine.
On the topic of Oxygen use vs. Bi-Pap:
Question: What are your thoughts on using oxygen instead of bi-pap machines? Is anyone
doing this? Because of "things" that occurred while I was hospitalized with Polio I am
unable to have anything on my face.
Dr. Bruno’s Response: Oxygen suppresses your brains urge to breathe but more
importantly actually constricts blood vessels in your lungs effectively decreasing the size of
your lungs. . Oxygen is no substitute for positive pressure ventilation with BiPAP or a
volume ventilator. John Bach‘s website is full of information on breathing and polio
survivors. www.doctorbach.com
On the topic of CPAP and a Sleep Study:
Original post: I had a sleep test and they say I have mild to moderate apnea and
recommended I use a CPAP. But it seems that most polio survivors in the Post-Polio
Coffee House [Editor: facebook group] have Bi-Pap. Should I be concerned about using
CPAP?
Additional Post: I had two sleep studies. The results showed that I stopped breathing an
average of 43 times per hour. Used CPAP for 6 months but the average was 32 times each
hour. I started using BiPAP two weeks ago and I‘m feeling a little better.
Dr. Bruno’s Response: Carbon Dioxide retention is as big a problem as is too little
oxygen! So polio survivors should always talk to their pulmonologist about replacing their
CPAP with BiPAP (or a volume ventilator).
On the topic of Nerve Pain:
Question: I am wondering about what I think is nerve pain in my ribs. The latest episode
began when I lay sideways on my right shoulder, then spread to what felt like a spasm pain
in my left rib area. Since I have a severe scoliosis and wear a plastic body jacket to sit up, I
can't get comfortable sitting or lying. I end up taking a low, short-term dose of narcotic pills
(which I hate to do) to try and break the spasms until hopefully it goes away.
Dr. Bruno’s Response: You need a diagnosis regarding the cause of the pain. Is it ―nerve
pain‖ or muscle spasm or both? Scoliosis and wearing a body jacket are going to put
pressure in different parts of your spine and joints that certainly can cause pain. Pain could
be radiating from nerve entrapment in your right shoulder or pinching nerves in your neck.
So talking to your doctor about an MRI of your neck would be the first place to look.
If spasm is the issue narcotics aren‘t the answer. Something like Valium would be more
appropriate. A proper head pillow and a body pillow may be of help to take the load off your
ribs and shoulder, give you some cushioning and better positioning in bed. You may need a
new body jacket, but again, diagnosis is the issue. You don‘t need a post-polio specialist to
diagnose and treat this. A local physical medicine (physiatrist) doctor would be of help.
By Dr Richard Bruno www.papolionetwork.org 2020
The following New York Times article is a good reminder that almost all of back pain is
caused by muscle spasm. This is especially true in polio survivors who've endured decades
of muscle overuse, muscle weakness, scoliosis, poor posture and have different leg
lengths. So, if you develop back or neck pain without other symptoms (like pain radiating
Polio NSW Network News – Issue 110 – February 2021 Page 7
into a leg or numbness) beware of doctors immediately referring you to a surgeon. Rest, heat, a non-steroidal anti-inflammatory drug like ibuprophen -- and maybe a few days of good old Valium -- could do the trick, followed by physical therapy to find ways to reduce back muscle overuse and to learn good posture. A bout of back pain should not lead to immediate epidural injections, prescriptions for narcotics or, God forbid, surgery. This said, polio survivors are more prone to have acute or, more commonly, progressing chronic back pain caused by arthritic spurs, stenosis, scoliosis and possibly herniated disks pinching spinal nerves. Still, without pain radiating into your leg or numbness, although an MRI may be indicated for diagnosing the cause of chronic back pain, beware of doctors giving you narcotics or referring you to a surgeon. Oxycontin, fentanyl patches and methadone have been found not to be effective in treating chronic back pain but are great if you want to live life stoned and constipated. A decrease in back muscle overuse and learning good posture is often the treatment even for chronic back pain. And if an MRI finds that you do have pinched nerves caused by arthritic spinal bone spurs or a herniated disc, six days of self-tapering oral steroids (a Medrol Dose pack) and then, if needed, epidural or facet joint steroid injections should be your first treatment options and typically are very effective. Remember, a US study found that 99% of back surgeries were unnecessary. A larger Scandinavian study found that 99.9% of back surgeries were unnecessary. In 37 years of assessing thousands of polio survivors I have had a mere handful of patients who needed and were helped by back surgery but many dozen who had unnecessary surgery and had the same or more pain afterward. If you are in that 0.1% who needs surgery, get at least three neurosurgical opinions. Just don't let yourself become one of the 99.9%. New York Times, August 2, 2013, 11:36 am by Nicholas Bakalar Well-established guidelines for the treatment of back pain require very conservative management — in most cases, no more than aspirin or acetaminophen (Tylenol) and physical therapy. Advanced imaging procedures, narcotics and referrals to other physicians are recommended only for the most refractory cases or those with serious other symptoms. But a study published in JAMA Internal Medicine suggests that doctors are not following the guidelines. Researchers studied 23,918 outpatient visits for back pain, a representative sample of an estimated 440 million visits made over 12 years in the United States. After controlling for age, sex, the nature of the pain and other factors, they found that during this time, Nsaid and Tylenol use fell more than 50 percent. But prescriptions for opiates increased by 51 percent, and CT or M.R.I. scans by 57 percent. Referrals to other physicians increased by 106 percent, which the authors said is a likely contributor to recent increases in expensive and often ineffective spine surgeries. The senior author, Dr. Bruce E. Landon, a professor of health care policy at Harvard, said that in most cases back pain improves by itself. But he added: ―It‘s a long conversation for physicians to educate patients. Often it‘s easier just to order a test or give a narcotic rather than having a conversation. It‘s not always easy to do the right thing.‖ Page 8 Network News – Issue 110 – February 2021 Polio NSW
By Dr. Marny Eulberg, MD www.papolionetwork.org 2020
Question: I had polio when I was 18 months old. I worked extremely
hard for almost 30 years in a factory, 10 and 12 hours a day. I had to
retire on disability at 42. Now, at 61 things are getting worse. I'm so
tired; I can't do anything longer than 15 minutes. I‘ve been on a
CPAP for a long time. I had a new sleep study done and was
diagnosed with both obstructive sleep apnea and central apnea. My
CPAP was set on 14. Now they want me on a BiPAP that is set at
18/13.
The question I'm asking is - will this make me dependent on the BiPAP? My muscles are
getting weaker. I feel like I have real muscle pain right now and I feel like I'm in a fog. I'm
very tired.
Dr. Eulberg’s Response:
Your situation, as you know, is complicated because of so many different medical problems
that affect diverse parts of your body. As I understand your email, one of your major
concerns is your breathing and the recommendation for BiPAP and the settings, which
seem to you, to be quite high. Since we have limited space in this newsletter, I will limit my
response to the issues of breathing and possible treatments and also try to provide some
basic education to individuals who also may be using CPAP or BiPAP.
It is important that all people with breathing challenges
understand the difference between oxygenation and ventilation.
Oxygenation is how much oxygen is absorbed by the lungs and
is then carried around the body by the blood. Ventilation is the
amount of air that is moved into and out of the lungs with each
breath or within one minute. So, ventilation includes the oxygen
that is brought in with each breath and the carbon dioxide that is
expelled with those breaths. It is possible to have normal
ventilation but low oxygenation, such as when a person with
normal lungs and normal breathing muscle function is in a low
oxygen environment at a high altitude, like that of Mount Everest.
It is also possible to have normal oxygenation with decreased ventilation especially if
someone is receiving supplemental oxygen, but at the same time they can suffer from
build-up of excess carbon dioxide. Of course, if someone is taking less breaths per
minutes than is needed, they likely will have decreased oxygenation and decreased
ventilation.
Oxygenation is usually measured by the ―pulse oximeter‖ that clips on a person‘s finger.
Oxygen levels in the blood is most precisely measured by testing a sample of blood taken
from an artery. High carbon dioxide levels are suggested by high levels of bicarbonate
(HCO3) in the blood (venous blood); carbon dioxide (CO2) can only be measured from an
arterial blood sample (ABGs = arterial blood gases).
Hypoxia (less oxygen in the blood than normal) can be due to muscle weakness of the
respiratory muscles, taking less breaths per minute than is needed or taking very shallow
breaths, or various disorders of the lungs themselves so that oxygen is not absorbed into
the lung tissue and then transferred to the blood. Decreased ventilation can be due to
messages not getting from the brain to tell the body to take a breath (central apnea); partial
or intermittent blockage of the airway (such as in obstructive sleep apnea), decreased
depth of each breath which can be due to weakness of respiratory muscles (diaphragm,
Polio NSW Network News – Issue 110 – February 2021 Page 9
chest muscles, some abdominal muscles, and some neck muscles); the effects of
significant obesity (one form of restrictive lung disease); or the effects of
medications/drugs/large doses of alcohol that are respiratory depressants. This is not a
complete list of all possible causes but includes the more common causes.
For those less familiar with some of the terms/acronyms--CPAP stands for Continuous
Positive Airway Pressure, which means a certain amount of air pressure is continuously
supplied by a machine to keep tissues in the throat and upper airway from collapsing and
acting as a one-way valve to block air going out the lungs. The person using CPAP
actually has to exert slightly more force than usual to breathe out (exhale) against the
constant pressure coming in.
BiPAP is a term used for Bi-level Positive airway Pressure which means that pressure is
used to push air in as the person begins to inhale and there also is some positive pressure
applied to the airway as the person exhales. The settings for BiPap are expressed as two
numbers: the first number is the pressure used during inhalation and the second number is
the pressure that is maintained during exhalation. Settings may seem to be higher than
―normal‖ for several reasons including leaks around the mask (difficulty getting a good snug
fit of the mask/interface), stiffness of the person‘s airway including the lungs (example
scarring of lung tissue from prior infections, COPD, interstitial lung diseases, pulmonary
fibrosis), or significant weight/bulk of the person‘s chest.
In your specific case, you said your doctors want the new settings on your BiPAP to be
18/13. This means the pressure against which you would be breathing out would be
slightly lower (13 cm) than it was with your CPAP which had a pressure of 14 cm.
You cannot get ―dependent‖ on oxygen or breathing machines by using them; it is not like
becoming physically dependent on narcotics. If you find that, in the future, you cannot
function without use of these devices, it is because you need them and you have learned to
appreciate the benefits. Your breathing muscles may become weaker over time, simply
because they have overworked for years and are ―wearing out‖ or your condition is getting
worse. It has been found that for most polio survivors with breathing problems using some
form of respiratory assistance at night actually allows them to breathe better in the daytime
because the respiratory muscles have had a chance to rest, get their nutrients restored,
have the waste products that have built up expelled, and get a ―second wind‖ (pun
intended)!
It is unlikely that any changes to your breathing equipment will help with your pain, although
if you do indeed start sleeping better that can make dealing with the pain a bit easier.
Different Styles of CPAP/BiPAP Masks www.thecpapshop.com/all-cpap-masks
Dr. Eulberg‘s inventory of informative Articles and Videos are available in the Living with
Post-Polio Syndrome section of our website. www.papolionetwork.org
Page 10 Network News – Issue 110 – February 2021 Polio NSWBy Daniel J. Wilson, PhD www.papolionetwork.org 2020
I have been wearing masks for assisted breathing for some 20
years. I had polio in 1955 when I was five. I developed scoliosis
and had a spinal fusion in 1960, but over the decades my spine
curved above and below the fusion. In 2000 I was diagnosed
with sleep apnea and put on a BiPAP. I initially found it difficult
to adjust to the mask. The first night, my Wheaten Terrier,
Abbey fled the bed thinking I had turned on a vacuum machine!
She eventually got used to it and returned to our bed. I, too,
initially found it difficult to adjust to wearing a nasal mask at
night. For the first several nights, I didn‘t make it all the way
through the night before I took it off. But I persisted. After a week or ten days, I discovered
that I was sleeping through the night and waking up much more rested. After a few years,
supplemental oxygen was added to the Bi-PAP.
After I was hospitalized with pneumonia in 2013, I was switched to a Trilogy ventilator at
night which provided more support, with its supplemental oxygen. Following the
pneumonia, I found myself short of breath during the day, and with the support of my
pulmonologist, began to use an old Bi-PAP during the day while sitting in my usual chair.
However, I had to switch to a nasal pillow mask so that I could wear my glasses (which
wasn‘t a problem when I was sleeping). Since then, I have used a ventilator every night,
the Bi-PAP during the day at home, and oxygen when I go out of the house. (For example,
to a restaurant in pre-COVID days.)
I don‘t particularly like wearing a mask most of the day and night, but I like breathing
comfortably even more. The machines mean that I don‘t have to struggle to breathe, and
that is comforting. For me, a key is finding comfortable masks. Recently I was in the
hospital with kidney stones and the nasal mask the hospital provided was a disaster. It was
cheap, didn‘t fit well, and leaked. I went back to the nasal pillows I had brought with me
and then had my wife bring my nasal mask from home. The lesson I took from this was the
importance of a well-fitting, comfortable mask.
Several different companies make masks and many masks come in different sizes. My
nasal pillow mask comes with three different size nasal pillows to fit different nostrils. If one
doesn‘t work, ask your therapist to try another until you find one you can live with
comfortably. When you find a comfortable one, persist in wearing it until it becomes
second nature. You will breathe more easily, be more rested, and healthier.
Wearing a mask attached to a machine 24/7 is not what I would have chosen 20 years ago,
but today I wouldn‘t give up either the masks or the machines.
Dr. Wilson‘s Complete Inventory of work is available on the website
www.papolionetwork.org
Dr. Daniel J. Wilson, PhD –Putting the Pieces of Polio History Together
Polio NSW Network News – Issue 110 – February 2021 Page 11With Dr. William DeMayo, MD.
―Winter Wellness‖ begins with "Deciding what you really Want to do and holding off of the
things that you want to do (w = impulse or desire, but not a decision).
"I believe that words that we use in our head have power over us and so deciding what we
Want vs what we want can be an important factor in changing our decisions. Many people
do this already with their finances and purchases but have not thought to apply the same
language to their activity and health.
Another set of similar words that can have power in influencing our behavior and health
include: "need to", "have to", and "should". The holidays are a particularly difficult time
when it comes to these activity decisions. In order to avoid chronic overuse activities, some
helpful questions to consider this holiday season may include:
• Do I want to continue to push myself to prepare the big family dinner (and risk creating
pain and exhaustion) or do I Want to put my relationships with family first and preserve my
energy by asking for help?
• Do I need to climb that ladder to put up decorations despite the obvious risk?
• Do I have to bake 12 dozen cookies or do I Want to avoid overdoing it and dial it back a
bit and ask for help?
• Should I ―shop ‗til I drop‖ or do I Want to be a better example to my kids and grandkids by
purchasing or even making one special gift.
All these questions center around individual values, desires, and goals. It is my hope,
especially during the holiday season, and the cold winter months, that we can all focus on
our real Wants and be less driven by passing desires/wants, ―have to‖, ―need to‖, and a
―should‖ mentality. The holistic model of wellness applies to us all, especially during this
time of year.
Dr. William DeMayo, MD - Complete list of articles and videos are available
on PA Polio Survivors Network website: www.papolionetwork.org
Dr DeMayo sends a message from Dubai where he works in a rehabilitation hospital.
A Message from Dr. DeMayo:
In general, access for individuals with
disabilities is very difficult here in the UAE.
Even so, I saw this sign and I thought very determined
Polio Survivors might enjoy it.
" “Beach access for people of determination”
Page 12 Network News – Issue 110 – February 2021 Polio NSW Nola Buck received this email from Diana Palmer, Executive Officer of IDEAS. We have benefited from information supplied to us by IDEAS over many years. I encourage members to register for their eNews subscription. I write to thank you for your committed support of the IDEAS newsletter, our bi- monthly publication of information and news specifically for people with disability and their families, carers, and supporters. Thank you too for generously sharing the newsletter with your neighbours, libraries, and support groups, to help others who may be just starting on their different life with a disability. IDEAS has dispatched the January/February issue to our print copy and digital subscribers. We are proud to have distributed accurate, fact-checked news to you for more than three decades. Feedback and contributions from all of you during this time has been a joy for our production team of writers, researchers, printers, and packers. We also thank our tireless and committed volunteers, without whom our newsletters would never have reached you. The 2021 January/February edition of the IDEAS newsletter is the last one we shall publish. The Federal Government has funded the Disability Gateway as the national disability information service, meaning we must make some changes to our service delivery. As of 27th January, our IDEAS Infoline will not be available. We suggest that people access the Disability Gateway, available on 1800 643 787 or at www.disabilitygateway.gov.au. You can subscribe to our eNews (an electronic newsletter emailed regularly) which will be maintained to keep people up to date with disability issues and news. The website will continue to be available with information curated by our information and content team, as will information be disseminated through our social media channels. If you know anyone who would like to subscribe to the IDEAS eNews, please email ideas@ideas.org.au and ask for them to be added to the eNews subscription list or visit the link here on our website. IDEAS is a strong organisation and remains committed to providing information and assistance to people with disability. Please check our website for news about our products and services' redevelopment. Polio NSW Network News – Issue 110 – February 2021 Page 13
Volume 10, Issue 4
Polio Oz News
December 2020—Summer Edition
By Emily Doak knee down, but I've never had the movement in
ABC Riverina the joints from my knee down anyway—you don't
miss what you don't know," he said.
Australia's been free of polio for 20 years,
but doctors say we still need to vaccinate "When I was about 11 years old I went into
hospital for about two months and I had a big
Source: www.abc.net.au—30 October 2020 operation called a triple arthrodesis, where they
sort of cut the muscles and fuse your ankles to
It has been 20 years since Australia was declared keep them at the right angle. I had to repeat a
free of polio, thanks in no small part to the year of primary school, I had the callipers, the
introduction of vaccines in the 1960s—but full bit. My Dad knew some boot makers and they
doctors say it is still important to get the jab. made me a little pair of football boots, everything
had to be specially made."
Key points:
Mr Wait said despite the challenges he had never
Polio is a highly infectious disease that can
let the impact of his polio stop him from doing
lead to long-term disability, paralysis and what he enjoyed.
death
Australia has been polio-free since 2000 "Even when I was in my teens I went to the
As many as 40,000 Australians experienced school counsellor and said I wanted to work in
paralytic polio in epidemics during the 1930s the motor trade," Mr Wait said.
and '50s He was told he would be better off working in a
The vaccine is included in the Australian bank, where he could just stand behind a
childhood immunisation schedule. counter.
According to paediatric infectious diseases "I wasn't having that," he said. "I got an
specialist Phil Britton, from the Children's apprenticeship with the NRMA as a panel beater
Hospital at Westmead, 95 per cent of Australian from there a few other panel shops and then
children get vaccinated. eventually TAFE teaching—yeah, I've had a good
life. We still go away in the caravan and I've just
"Australia got rid of polio through vaccination bought myself a little mobility scooter for getting
and needs to maintain this because there is still around. I think there's a lot worse off than I
polio in the world," Dr Britton said. "We think [am]."
part of our global responsibility to the children of
the world is to
continue to
maintain Australia's
polio-free status
because we are Photo:
aiming for Wagga Wagga man
eradication of this Doug Wait
infection." contracted polio
when he was eight
Living With Polio months old and can't
Wagga Wagga remember life
resident Doug Wait without the impacts
was eight months of the disease.
old when he (ABC Riverina:
contracted the Emily Doak)
disease.
"I can't move any of
my joints from my
National Patron: Michael Lynch AO CBEPage 2
Polio Oz News
Polio Australia Polio Aust ralia ’s Website s
Representing polio survivors
PO Box 500
Kew East Victoria 3102
Phone: +61 3 9016 7678
office@polioaustralia.org.au
President—Gillian Thomas OAM Welcome to the Polio Australia website. Polio Australia is a not—for—profit
gillian@polioaustralia.org.au organisation supporting polio survivors living in Australia. This website
contains information about polio, the Late Effects of Polio, the work of Polio
Vice President—Gary Newton
gary@polioaustralia.org.au Australia and much more.
Secretary—Maryann Liethof www.polioaustralia.org.au
maryann@polioaustralia.org.au
Treasurer—Alan Cameron
alan@polioaustralia.org.au
Editor
Maryann Liethof
editor@polioaustralia.org.au
Inside this issue: The Polio Health website is a comprehensive resource for both health
professionals and polio survivors. It contains clinically researched
Australia’s Been Polio Free For 20 1 information on the Late Effects of Polio; the Health Professional Register;
Years and where Polio Australia’s Clinical Practice Workshops for Health
President’s Report 3 Professionals are being held.
From The Editor 3 www.poliohealth.org.au
Clinical Practice Workshop Update 4
Vaccines And Viruses 4
Community Programs Update 5
Health Professional Outreach 6
Polio Awareness Month 2020 6
Supporting Polio Australia 7 The Australian Polio Register was established by Polio Australia in
More About Australian Polio 8 October 2010 to gather information on the numbers of polio
Survivors survivors living in Australia today, whether or not they contracted polio in
Nutrition and Immunity 10 this country. To make the Australian Polio Register truly reflective of the
Polio Survivor Reflects 12 unmet need for polio services throughout Australia, we urge every
Australian polio survivor to join the Polio Register. Our strength lies in our
Polio Survivors Receiving Awards 13
numbers—please help us to get you the services you need by adding your
New SLA Resource For GPs 15 polio details to the Register. You can register online or by downloading and
GPs And NDIA Collaborate 15 completing a paper copy.
The Eradication Fight Must Go On 16
www.australianpolioregister.org.au
Couch Conversations 18
David Onley’s Polio Story 19
Royal Commission Reports 20
Polio-Related Research 21
GPs Called To Help 22
Nerve Pain Explained 23
Could COVID-19 Lead To Measles 24
Polio Australia’s “We’re Still Here” website is a hub for sharing people’s
The Campaign To Wipe Out Polio 24
stories, polio survivors in the media, polio awareness raising campaigns,
Handmade Cards 25 events of interest, Rotary talks, and so much more. It is constantly being
There shall be eternal updated, so check in often.
summer in the grateful heart. www.stillhere.org.au
~ Celia Thaxter ~
Unless otherwise stated, the articles in Polio Oz News may be reprinted provided that they are reproduced in full (including any references) and
the author, the source and Polio Australia Inc are acknowledged in full. Articles may not be edited or summarised without the prior written
approval of Polio Australia. The views expressed in this publication are not necessarily those of Polio Australia, and any pr oducts, services or
treatments described are not necessarily endorsed or recommended by Polio Australia.Page 3
Polio Oz News
President’s Report
Probably like many of you as we At our recent Annual General Meeting (held via
spent more time than usual at Zoom) we welcomed two new members to the
home this year, I have been Board: Helen Leach, representing Polio SA, and Ian
discovering some interesting Holding, representing Polio WA. There were also
videos on YouTube. Recently, some Executive changes: Gary Newton was elected
these have included the many as Vice President, and Maryann was elected as
works of musician, satirist and Secretary. Profiles of all Board members can be
mathematician Tom Lehrer. The found here. On the reporting side, our 2019-2020
title of his 1965 live album “That Annual Report can be read online or downloaded
Was The Year That Was” here, while our 2020–2022 Strategic Plan is
seemed to sum up 2020 for me! available here.
My year was a series of ups and
Gillian Thomas OAM downs — if yours was the same, Following the AGM, we heard from our National
I hope there were more ups than downs, and that Patron, Michael Lynch AO CBE, who brought the
2021 will be more stable for all of us. Board up to date on his promotional endeavours on
our behalf.
Polio awareness and Polio Australia both got a great
We are farewelling our Resource Manager, Darlene
publicity boost early in the year with a 4-page
Felsch, this month. Darlene has been working with
spread in the Good Weekend magazine. Not long
us since August 2019 and has been a great help in
after, the country was grappling with the challenges
setting up a number of policies and procedures in
of COVID-19, and parallels were soon being drawn
both finance and human resource management, as
with previous polio epidemics. As a result, I was
well as providing secretariat services to the Board
invited to participate in an episode of the ABC Radio
and assisting the Team with funding proposals.
Big Ideas program “Vaccines and viruses: a history
With her contract concluding, Darlene is moving on
of pandemics” (p4), fittingly broadcast at the start
and we wish her well in whatever direction her
of October’s Polio Awareness Month. The remainder
career now takes her.
of October was frenetic with many media interviews
and the opportunity to co-write an Op-Ed (p16) On behalf of both the Board and the Team, I wish
with Sarah Meredith, from Global Citizen, on polio you Seasons Greetings — we look forward to
eradication and the need to keep supporting polio continuing our advocacy, information and education
survivors — because we are “still here”! services for you over the coming year.
Gillian
From the
2020 has certainly been a year will, undoubtedly, be a familiar story for many
to remember—and to forget! readers.
I’m sure most of us are
General Practitioners (GPs) are featured in three
breathing a sigh of relief that
articles (pages 15 and 22), and it’s excellent to
it’s almost over . . . However,
see our front-line medical practitioners so
believe it or not, there has still
engaged.
been a lot going on in relation
to things-polio — as you will Recommendations from the Aged Care Royal
read in this bumper edition! Commission have been summarised for
relevance to polio survivors (p20); although the
The Polio Australia Team has
Maryann Liethof
Disability Royal Commission Report (p21)
Editor continued providing what
continues to be a ‘work in progress’.
services they could throughout
the year, and have all provided their program Many articles look at the need for polio
updates. eradication to continue. Although Australia was
declared polio-free 20 years ago, the fight
COVID-19 has challenged all of us in many and
continues in other countries — especially with
varied ways, which is reflected in several of the
the added complication of COVID-19. Could
articles included in this Summer Edition of Polio
COVID-19 Lead To Measles And Polio Epidemics
Oz News. If one of your challenges has been
and The Campaign To Wipe Out Polio (p24)
adhering to a less-than-ideal diet, then Melinda
provide detailed descriptions of the complex
Overall’s piece on Nutrition And Immunity (p10)
reasons why we are still battling with polio and
might just nudge you back on track.
other viruses such as measles.
Past President, Dr John Tierney, and current
I hope these, and the numerous other bits and
President, Gillian Thomas, have been recognised
pieces I have curated for this edition, are of
for all their passionate work over the years on
interest. I am now editing Polio Oz News on a
behalf of polio survivors (p13); and John has
voluntary basis (having ‘retired’ in 2019) but still
turned his skills to writing Opinion pieces for the
manage to find much to inspire me in the ‘polio
print media. In The Last Great Epidemic (p12),
world’. Best wishes for The Season!
he reflects on his own experience of polio which
MaryannPage 4
Polio Oz News
2020 Program Update: Clinical Practice Workshops
By Michael Jackson Spinal Life Australia Healthy Living Centre in
Polio Australia Clinical Cairns. There I delivered 3 workshops and a
Educator community session (on behalf of Steph who was
stranded in Melbourne!), and also presented at a
This year has clearly been local Rotary Club meeting. It was a hectic few
an unusual one for this days but it was rewarding to get out and deliver
program. 2020 started with the workshops and meet survivors in a location
a complete staff change— Polio Australia staff had not visited before.
Paul Cavendish had handed
on the role to me in late Three workshops were set up to be delivered via
2019, and in January Zoom in mid-November, mid-December, and mid
Rachel Ingram moved on -January. The November session had three
with her assistant role being taken up by professional attendees and went smoothly on
Paulette Jackson in late March. Paulette has done quite limited advertising. We currently have 13
a tremendous job assisting the clinical educator registered for the Zoom workshop in December,
and the rest of the team this year. and 6 in January. If this mode of delivery proves
to be viable, we will seek to offer the workshop
The coronavirus pandemic arrived in mid-March via this mode as well as live throughout 2021.
just as numerous workshops were due to take
place. This resulted in many other work-from- A workshop was scheduled at Port Pirie, SA in
home projects coming to fruition in the absence early December, however several days after
of multi-state travel for the workshops. plans had been finalised the Adelaide outbreak
occurred, necessitating rescheduling of the
Workshops Delivered in 2020 workshop and a delay in visits with other
A Toowoomba workshop was cancelled in mid- professionals, survivors and facilities in Adelaide.
March due to low registration before the event. Over the winter a four-part online webinar series
16 other workshops scheduled in 2020 were also was presented and recorded as foundation
cancelled due to the pandemic, with the intent of information for health professionals, drawing on
rescheduling when facilities were re—positioned some of the workshop material. Professionals
for live education and travel between states was receive no professional development credit for
unrestricted. Rescheduling took place viewing these videos, but they can access
optimistically for regional Victorian workshops in recorded information on the topic at their own
late winter, but then the outbreak in Melbourne convenience. These videos are also being used to
occurred, requiring a further reschedule into supplement an e-Learning course for aged care
2021. workers. This course is in development and due
In early November I was able to visit the new to be rolled out in early 2021.
Vacc ine s And Viruse s: A Hist ory Of Pandemics
With Paul Barclay
Big Ideas: ABC Radio National P rogram
Duration: 56min 28sec
Broadcast: 4 Oct 2020
Recorded: 29 Sep 29 2020. Collaboration
with the National Museum of Australia
COVID-19 seems like a contagious virus without
parallel, but Australia has been hit by
devastating pandemics before.
The Spanish flu killed 15,000 Australians in
1919, smallpox decimated the Aboriginal
population, HIV/AIDS once claimed 1000
Australian lives a year, and polio caused
paralysis in tens of thousands.
This panel discussion examines the history of viruses and vaccines and their impact on Australian
society and science.
Speakers
Peter Doherty—Laureate Professor, Microbiology and Immunology, University of Melbourne; winner,
1996 Nobel Prize for medicine.
Dr Peter Hobbins—historian, Artefact Heritage Services, University of Sydney, State Library of NSW.
Gillian Thomas—President, Polio NSW, Polio Australia.Page 5
Polio Oz News
Community Pro grams Update
By Steph Cantrill (check the time in your location!)—Aged Care
Community Programs Question and Answer session. W e’ll have a
Manager representative from the Department of Health
talking to us about aged care services and
As this rather unusual year answering your questions. To register for this
draws to a close, we are session, please go to:
looking towards 2021 with www.bit.ly/PolioAgedCareQandA.
some hint of optimism for
the return of face-to-face Zoom Chats
events for our community As well as webinars, we’ve also had a number of
programs. But this has more informal Zoom meetings. It was great to
definitely been a year of get people together over Polio Awareness Month
learning, and switching to to share their stories and learn from each other.
virtual sessions has had some lasting positives There have been a few votes for monthly open
for sure. Zoom chats to continue on an ongoing basis—
watch this space! We’ll definitely do our best to
Videos continue the regular virtual chats through 2021
In the last few months, we have slowed down a as we return to the busy schedule of face-to-
bit on making videos, but they’re still available face sessions.
for viewing. Check at our YouTube channel, click
“Playlists” and select “2020 Videos for Polio We’ve also had a couple of smaller chats,
Survivors” (or any of the other playlists you’re specifically for people who are already NDIS
interested in viewing). Alternatively, you can go participants and those who think they’re eligible
to the Polio Australia Facebook page and click for the NDIS. This is a good way for people to
“videos”, and scroll through the range of videos share tips on accessing the scheme and getting
we’ve posted there. the most out of your plan.
Please contact me at
Webinars steph@polioaustralia.org.au if:
The last few months saw a spate of Zoom
webinars for the polio community, which were You are interested in joining our future NDIS
well-attended and greatly appreciated. We’re chats
extremely grateful to our presenters, from a You would like to be update about any other
range of health professional and lived experience Zoom chats
backgrounds, for giving their time to share
valuable information with us. The recordings of You have ideas for future webinars
those videos will be viewable on our YouTube
channel and Facebook page soon. I would like to wish everyone a very happy
festive season, and I hope you are able to
Our next webinar is on the 14th of December at connect with loved ones despite some ongoing
11.00am Australian Eastern Daylight Saving time restrictions. Here’s to a fresh start in 2021!Page 6
Polio Oz News
Health Professional Outreach
By Michael Jackson Spinal Life Australia for GP resources and
Polio Australia Clinical Educator planning a Brisbane conference
Dr Nigel Quadros to write a MedicSA article
The Clinical Advisory Group now has 18 members and develop a telehealth clinic concept
from a diverse range of specialty fields who are DiverseWerks to have CALD translation of our
able to comment on post-polio questions and Migration Services fact sheet
topics. A LinkedIn professional group has been
operating for a few months now with Clinical University of New England researchers to
Advisory Group members, serving as a discussion write and publish a meta-analysis and
platform for members using LinkedIn. systematic review
The University of Queensland Rural Clinical
Three clinical topic videos were created and School to developing rural LEoP education
published on the Polio Australia YouTube opportunities
Channel, and are freely available for viewing. HealthPathways to publish a LEoP pathway in
A research study written in partnership with UNE Metro South Queensland
academics, Evaluation of exercise for people who The National Disability Insurance Agency to
are polio survivors: A systematic review and create a LEoP Snapshot for NDIS providers
meta-analysis, has been reviewed and is
undergoing edits, with a publication timeframe The Year Ahead
within the next few months. Looking forward into 2021, we anticipate that
live workshops will resume in February after the
Partnerships distractions of Australian clinicians’ summer
Numerous partnerships were developed during holidays have passed. In the short to mid—term,
the year to work on various projects where our it is obvious that the delivery of any live
capacity to do so would have been limited workshops will be contingent on mitigating for
otherwise. The quite diverse list includes: and containing any COVID outbreaks across
each Australian state. Despite this uncertainty,
we have many projects to complete and
opportunities to take to reach our program
outcomes.
Polio Awarene ss Mont h 2020
By Paulette Jackson And finally, Global Citizen partnered with
Administration Officer RESULTS AU, UNICEF Australia, Rotary
International, and Polio Australia to host a
In October, we celebrated World Polio Day event on 21 October (you can
Polio Awareness Month view the event here).
and the theme was Past
Pandemic Survivors. Bunnings provided a generous donation to
With the acronym of PPS, support our Treasure Hunt where we asked you,
you can see what we did our members, to find unknown polio survivors.
there… We had two lucky winners who found survivors,
and each winner received $250 in Bunning’s gift
It was a busy month with a lot happening. cards.
Maryann put together a pictorial review of The staff were also busy with various media
Polio Australia’s 10 years of Polio Awareness outlets. There were articles in The Senior,
Month campaigns. Croakey, and Illawarra Mercury. Big Ideas, ABC
Steph hosted weekly Zoom Sessions where Focus, and ABC Australia Wide interviewed Gillian
polio survivors shared their stories and Thomas and Alan Cameron. Also, Gillian, Steph
discussed various topics. and Michael spoke at various Rotary Clubs. You
Dr Stephen de Graaff, a rehabilitation can check out all of our articles and interviews on
physician based out of Victoria was kind our Media Coverage Page.
enough to host an informative Question &
Overall, it was a successful month of awareness,
Answer session with polio survivors.
education, support, and outreach. The Polio
Many survivors also shared their stories on our Australia staff look forward to next year!
Still Here website.You can also read
